DecodeME - UK ME/CFS DNA study underway

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Sasha said:
@Andy - I still haven't received an email but gather from someone who has that it says that the study’s Management Team will host a Q&A webinar at 4pm on Monday 6 July, which is great news.

I just tried to add it to the S4ME calendar but I've forgotten how to do it.

Can you help?
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You can only add threads to the calendar. Create the thread, then go back into it and use the Thread Tools drop down menu and use Calendar Add option.
 
Sasha said:
I could see the whole interview with Dr Nina Muirhead at the top of the article, despite the paywall:

https://www.thetimes.co.uk/edition/...it-felt-like-id-been-in-a-car-crash-9nrk56fcb

It's absolutely superb. Really couldn't be better. She's a terrific ambassador for us.
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That article was great. Superb interview with Muirhead. Much better report than the Guardian, who as usual can't resist a knife to our back. That picture is so insulting.

When I read the Guardian piece, right next to it was the BPS grievances report about the "perils" of online activism, how ironic. The "perils" are a large genetic study, impressive for an "anti-science" community. This study is the result of years of relentless activism. Though it's true that this is the most perilous of outcomes for our BPS overlords. Seeing other ME coverage below the article shows how much of a mess of things the Guardian has made.

Congrats to everyone who made it happen! This is really big news.

I had not thought of the public reaction and I think it would be really important to record the inevitable rantings on the "Bad ME quotes" thread. There will be a lot of angry people spewing vitriol at us, including the people who have been screaming "ACADEMIC FREEDOM" for years but somehow don't share the same sentiment when it comes to real research.
 
Sasha said:
Numbers going up!

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Wow, impressive numbers!

The UK is really the best place for this to happen. Bastion of woo, where 2 decades of clinical practice have failed miserably. But probably the country with the most organized patient community, able to spread the word to thousands in part thanks to all the bad influence from the BPS folks.

And the timing could not be more perfect. Not only will COVID-19 bring many new patients in, it will also help massively with recruitment and visibility.
 
Jonathan Edwards said:
I agree that the Guardian does not seem to have made any stupid mistakes this time, but the contrast with the photo in the Times is telling. The Times has real people and you can see they are real people. The Guardian presents a fantasy through a veil of its own preoccupations. The piece is so short it is almost 'OK we have to cover this but let's not lift the lid too high - we might discover some egg on our face'.

I am a bit disappointed in To Whipple's piece in the Times. He really doesn't see the wood for the trees and tries to play all sides equally. On the other hand his piece is relegated to the bottom, as if maybe this is an echo of an old story finally fading off the page.
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Can someone post Tom Whipple's piece? I have maxed out my 2 free articles. Thanks.
 
There are so many people who made today's announcement the success that it has been, esp @Andy @Simon M Sonya, the charities, the funders and our comms/marketing partners. There will be many obstacles to overcome on this 4 year journey. But the best bit about today - for me - was that I now know that we won't be travelling alone. So thanks to everyone who commented and supported today. It means a lot.
 
Chris Ponting said:
There are so many people who made today's announcement the success that it has been, esp @Andy @Simon M Sonya, the charities, the funders and our comms/marketing partners. There will be many obstacles to overcome on this 4 year journey. But the best bit about today - for me - was that I now know that we won't be travelling alone. So thanks to everyone who commented and supported today. It means a lot.
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Thank you, Chris! This has been a brilliant day for all of us. I've waited more than 30 years for serious, large-scale science like this. I can't thank you and your team enough for everything you've done and are going to do.
 
Andy said:
Someone signing up to the mailing list is not automatically entered into the study as a potential participant, in the same way that, for example, I can sign up to receive newsletters from a website but not have an account with that website.

What I'm suggesting is that if you have already signed up to the original mailing list, there is no harm in signing up to this new one, other than potentially receiving two update emails from us at a time.

If you are confident that you are on the original mailing list, then don't sign up to this new one. The first list was our budget workaround at the time, the second list is now the 'proper' one, and all on the first list should be merged into the new list in time.

No matter which list you are on - first, second or both - you will still need to sign up to the recruitment process itself once it's opened.

I hope that clarifies it, let me know if not.
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I've changed my email address since the first sign-up - hope that's OK? I don't currently have access to the original one.
 
Sasha said:
By government - the MRC and NIHR are government-funded.
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That’s even more impressive!! The tide is really turning:thumbup:

Also, the amazing amount of people signing up to contribute to research in such a short time, should hopefully interest journalists to turn this ridiculous narative around of patients being “against” research. Quite the contrary it seems!!
 
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